Another One Bites the Dust
October 6, 4:18 a.m.
Dear Friends and Family,
Nancy has made another critical and momentous decision that we want to share with you, but instead of starting my progress report abruptly—let me bring you up to date on other matters first. (I think when writers do this in their works of fiction or, for that matter, nonfiction this is called building the aura of suspense.) So let me begin our continuing story by sharing with you the outcome of our Seattle trip.
After two delightfully carefree days in Seattle during which we dined atop the Space Needle, visited the Seattle Art Museum, and shopped at the renowned Pike Place Market, Nancy and I boarded Polly and Edgar Stern’s plane for a relaxing flight back to Utah. We are accustomed, as frequent standby passengers, to traveling light.
On our return trip, though, we were not flying standby. We had as much luggage space as we could ever want in this lifetime. So we took advantage of this once-in-a-lifetime opportunity to bring home a multicolored, uniquely shaped, hand-blown vase for our dining room table, as well as a huge cold “travel box” containing fresh salmon, oysters, mussels, and crab.
(While there are not sufficient words to express our gratitude to the Sterns for converting a stressful medical-related trip into an unanticipated glorious respite, I will say “thank you” once again. Thank you from the bottom of our hearts.)
Nancy and I came home completely refreshed and recharged, and we phoned Finn Bo (Dr. Peterson) as soon as we arrived in Woodland. For nearly an hour, Dr. Peterson answered our questions and then Nancy and I spent another hour or so in deliberation,
The next chapter in our journey may surprise you. Nancy has chosen a hospital room in Salt Lake City. After countless hours spent researching our options, it turns out that the survival rates for a transplant patient at the University of Washington in Seattle are essentially the same as the survival rates of patients at the University of Utah in Salt Lake City.
We were thoroughly impressed with Dr. Appelbaum, his program, and the facilities in Seattle, but when Nancy searched her soul deeply, she felt equally positive about Dr. Peterson and the program in Salt Lake City. Naturally, the crucial factor that served to tip the balance was Nancy’s desire not to disrupt Jaret and Jayna’s lives. Even though they have both stated unequivocally and without hesitation that they would relocate to Seattle, their mother did not want to disrupt their lives further.
So another major decision is now in the rearview mirror, but we still need to determine the type of transplant. Nancy has recently endured a long battery of tests to see if she is strong enough to attempt the full myeloablative transplant. If it is determined that she can’t withstand the procedure, the choice will be made for us and she will have the “mini.” While Nancy is chronologically older than anyone who has ever attempted the full transplant before, Finn Bo thinks she is in excellent shape for her age. He does, however, want a more detailed look at her heart, lungs, kidneys, and GI system. (He must have seen her doing laps in the hallway while having her chemotherapy.)
We are more than a little bit nervous to travel back into the world of needles and vital signs again. But Nancy seems at peace, in large measure from the support we have been given by so many of our friends. Thanks for your continued thoughts and prayers. They will, as they have in the past, help us prepare.
Summary: Nancy has decided to have her transplant in Utah. The only decision left is the type of transplant—mini versus full.
My sincerest thanks,
Winnie
Laughter Is the Best Medicine
October 9, 6:43 p.m.
Dear Friends and Family,
This afternoon, the phone was ringing like a siren’s song as we opened the door when we returned from our brisk morning walk. After running into our well-lit kitchen to grab the phone, I saw the name on the caller ID. Instinctively I hesitated as I took a deep breath. Nancy looked at me with an unspoken alarm, silently asking, “What’s the matter?”
“Dr. Winn, this is Rachael from the transplant team. I have exciting news. Your donor has consented to the transplant.”
A single tear rolled down Nancy’s cheek because I had been holding the phone so she could hear my conversation. Her tear matched mine. Another piece of the puzzle was now in place.
“Thank you so very much, Rachael.”
Recently, our time at home has been pretty quiet and uneventful, so I haven’t written as much to you. However, during this time away, we have made a “family” discovery. On the days when I’m not at the office early, Jayna doesn’t have school, and Nancy is not hurrying to a doctor’s appointment or pre-transplant test, our family has rediscovered a special time—breakfast.
With everyone rested, each of us now takes turns cooking and serving the first meal of the day. It’s quickly becoming a family tradition. Nancy’s taste buds have rallied from the burn of chemotherapy and she craves Krispy Kreme donuts. So I serve her two KKs—one glazed and one chocolate. (Why not? In a little more than a week, Nancy is due for her next round in the hospital. She won’t be eating much then, if at all.)
Food is merely a small part of our new ritual. Breakfast often extends to midday. Whether we’re relaxing in the dining room or lounging on our new living room furniture, we share family memories, tell personal stories, read the many cards from friends and acquaintances, and look at almost any type (regardless of subject) of interesting pictures, particularly of faraway places and lands.
Not surprising, the fall sunshine comes from a lower point on the horizon each day now, but it still catches the leaves on the many aspens and cottonwoods. The trees shimmer in the soft breeze and shine with such a brilliant gold they seem ready to burst and explode into a million pieces of dazzling rubies, sapphires, and diamonds.
Quite simply, we feel rich both in spirit and in our souls. We are very fortunate to have each other—our little family.
We love our homey paradise by the river.
We love that Nancy is home and feeling decent.
We love that she is getting strong.
And most of all, we love that she is getting ready for what lies ahead.
On most days, we take turns playing music on the stereo system, we go to almost any movie matinee that appeals to Nancy, and we play Monopoly, Clue, and computer games until far too late in the evening. We also (far too often) fall asleep watching videos—all three of us (Nancy, Jayna, and me) in our king-size bed. Unfortunately, Jaret’s school schedule makes him a weekend-only visitor. But on the many frequent weekends he is with us, he stakes out his favorite spot—on the floor surrounded by lots and lots of pillows and blankets.
Occasionally, we visit a restaurant that strikes Nancy’s fancy. Most often, though, we dine on delicious meals that are silently dropped off on our doorstep by the informal network of supporters. (We feel your love, and the food that you provide us nourishes not only our bodies, but it strengthens our souls as well.)
Our home also continues to be filled with something that similarly sustains our journey—laughter. It is more important now than in the past. Laughter soothes our family’s collective soul.
“Look, Dad. Mom has a natural Mohawk.”
With great hesitancy, Nancy now allows Jayna and me to examine her “fuzzy” head from all sides. Nancy’s salt-and-pepper strands, now barely an inch long, come together like small teepees in the center of her scalp, extending from the cowlick in the front of her head to the endearing singular mole toward the back.
(Jayna’s right. It does look like a Mohawk.)
As you also know, an important part of my morning ritual is kissing Nancy’s head. I perform this simple ceremony each and every day—right after Nancy has her second donut and before we do the dishes.
“Your turn to cook, Dad. And to do the dishes.”
“Why are you so mean to me, Jayna?”
“You know, Dad.”
“What, sweetheart?”
“I would definitely trea
t you better if you had leukemia like Mom.”
Jayna’s deadpanned statement is, as always, timed perfectly. It makes all three of us laugh. Especially Nancy.
Summary: Our time together at home has been magnificent.
Sent with love,
Winnie
When Final Really Is Final
October 10, 11:33 p.m.
Dear Friends and Family,
Yesterday I wrote you about our fun-filled time at home.
(That was yesterday.)
Today began something like this:
“Good morning, sweetheart. How was your night?”
“You were asleep the minute you hit the pillow, Winnie.”
Uh-oh.
Once again, my bride’s southern roots were in full display. She avoided my question.
“I know, Nancy. I was exhausted. Chuck and I rode hard after work. And the clinic was way too busy for a fall day. But what about you? Did your leg bother you?”
Nancy’s sciatica has been a nagging issue since her last hospitalization when she overdid her exercise. (She’s not allowed to take anti-inflammatory drugs because of her blood-thinning medicine.)
“It did ache last night. So I took a pain pill. That helped. But . . .”
Nancy didn’t have to finish the sentence. I recognized the look on her face. She’s having difficulty sleeping for the same reason I am—we’re both thinking about the decision.
As we wait for the final word from the hospital that our “angel” donor is medically fit and willing to share his precious bone marrow, it isn’t difficult to be constantly (and rightly so) preoccupied. Nancy and I both find ourselves continually ruminating over the sound bites we’ve heard from experts in the field of leukemia. We’ve found many hematologists and oncologists willing to discuss Nancy’s case, but their voices reflect the uncertainty of current knowledge.
The day after one prominent doctor made the statement, “I see no reason for Nancy to attempt an unmatched Allo (or full transplant). It’s too risky,” another specialist summed up his opinion with, “A standard full transplant gives Nancy the best chance of a durable remission (or cure).”
Other calls I have made have ended with, “There is no wrong answer or choice in Nancy’s case” or “At our center, we’d consider an autologous transplant.” (An option that has never even appeared on our radar screen.)
We have been told so many conflicting things by so many well-meaning experts:
“Chemotherapy alone might be the best way to go.”
“A mini has the same numbers but with far less toxicity. The full transplant has a 20–30% mortality rate in the first month.”
“The study using the mini has only twenty-five subjects. It is a very small study.”
“The full transplant has been around for years. The study comparing it to the mini isn’t finished. It won’t be done for another couple of years.”
The single insight that has helped us more than any other to get through the complex and sometimes conflicting studies and statistics is something our doctor Finn Bo told us: “You can change your mind up until the first day of the ‘conditioning’ regimen of medicines that will ablate your bone marrow. Once that starts, there’s no turning back.”
“Was your mind racing again, Nancy?”
“Yes, one minute I think I want the mini, the next the full.”
“What do you think, Winnie?”
What do I think?
I think I’m scared and sad. I am extremely sad. I think I want to scream. I want to stop thinking. (What I really want to know is what Nancy is thinking about in the middle of the night, in the darkness.)
What I am thinking is, “How can I help?”
“Nancy, I think that whatever you decide, we’ll be all right. I think—no, I know—that you are really physically and mentally strong now. I’ll be holding your hand the whole way. And you have so many people rooting for you.”
“Will you make breakfast today, Winnie?”
Summary: We are wading through the various transplant alternatives. There are many divergent opinions among the experts as Nancy’s transplant date comes ever closer.
Fondly,
Winnie
Merriment in a Dark Time
October 14, 2:20 a.m.
Dear Friends and Family,
The last three weeks have been glorious.
Quite simply, we have watched the leaves change while waiting for our lives to change, as well.
Yesterday, Wednesday, October 13, was Decision Day.
Yesterday Nancy and I had an hour-and-a-half meeting with the transplant team at the University of Utah. After our meeting had ended and as we were walking down the hall toward the fifth floor elevator, I took Nancy’s hand in mine after looking at her face, “You look a little blue, darlin’. What did you think?”
Nancy squeezed back tightly. “I’m still happy with our decision. I just wish I could’ve closed my ears after the first twenty minutes.”
I couldn’t have agreed any more with Nancy. The first twenty minutes of our meeting were great. Dr. Tsai, Dr. Peterson’s partner on the transplant team, had expertly explained his views on the mini versus full transplant dilemma. He was clear, concise, and straightforward. Dr. Tsai had been the best yet at explaining both the pros and the cons. Those twenty minutes were just what we needed to finally make our choice.
After that?
The meeting was a complete nightmare. I should have brought earplugs for Nancy. She was forced to sit quietly and listen about the seemingly endless list of awful things that might happen to her during and after her transplant.
We learned the side effects of each poison medicine Nancy will receive.
We explored how and why any of her organs can fail.
We discussed scientifically why the next thirty, or even one hundred, days might be a living hell.
The descriptions of potential side effects went on and on.
As a medical professional, I understand the concept of informed consent.
Simply, we were not prepared for “Sign here, Nancy, that you may live. But it might be hell. Or, as I’ve made you acutely aware, sign below that you fully realize that if you don’t experience a living hell, you might simply die.”
I was more than a little surprised that Dr. Tsai didn’t ask, “How much do you want to hear, Nancy?” All along, Nancy has only wanted information when she was ready. Her beautiful face is so easy to read. Couldn’t Dr. Tsai see the look in her eyes? Every line on her face said, “Not now.”
We had been sent a consent form to review before the meeting. It was twenty-six single-spaced pages. Twenty-six pages. I’d read every line, crying by the end of each section. When I gave Nancy the option of hearing a three-word summary, she gladly agreed. She quickly signed the last page; not reading a word, as I chose my three words carefully, “Transplants are dangerous.”
She was able to quip, “Let me guess. It says I have a 50% chance of dying. And if I don’t die, everything that can go wrong will go wrong with any part of my body at any time.”
(Maybe she had read the consent form.)
All I could think about were two things: Why hadn’t I brought earplugs for her? And how can I save her from the heartache I am feeling?
Jayna, who had also attended the meeting, looked at Nancy and me. As usual, she initiated the positive words we needed for the moment. “I think it’s amazing that Mom will have a new blood type,” she said as she placed a sweet kiss on Nancy’s cheek. “You’ll be A-positive. And the nurse told me you’ll get the color of the donor’s hair. You’ll have more fun as a blonde, don’t you think, Mommer?”
Nancy whispered, “I’ll be glad just to have hair again.”
“Maybe we should think of this hospitalization as a test, Nancy. And Dr. Tsai said you will assume the donor’s A-positive blood type,” I added. I took a pen out of my pocket as well as the card Dr. Tsai had given me. I wrote the letter A and next to it the symbol + on the back of the card
for Nancy and Jayna to see.
“Can’t do any better than an A-plus.”
(My one-liners are nowhere near as funny as Jayna’s or Nancy’s.)
“How ‘bout you, Jayna? Comfortable with Mom’s decision?”
“Totally, Dadder. I was leaning in that direction all along. Dr. Tsai merely sealed the deal. And Jaret told me last night he felt the same way. He’s confident you’re going to sail through this, Mommer. Me, too.”
Nancy turned toward me, “Winnie, your turn. Did we make the right decision?”
“I . . .”
I was saved by the opening of the elevator door, as a family of four and a family of three entered the cab, squeezing Nancy, Jayna, and me to the back. Nancy raised her index finger to her lips. No need to answer my question, her gesture told me. She knew my answer anyway.
Nancy squeezed my hand again and winked. The father next to me smiled.
Once again, our family found merriment in a dark time.
Summary: Even though only Nancy’s vote counted, our family unanimously decided that she should have the full (traditional) transplant. I will send details of the next part of our journey later this evening when everyone is in bed.
Love,
Winnie
A Journey of Daydreams
October 14, 10:11 p.m.
Dear Friends and Family,
We are home now and everyone is tucked safely between the sheets. So I want to explain to you what will happen in the ensuing days, weeks, and months ahead.
Nancy will enter the University of Utah Hospital in three days, October 17. Once there, she will receive six days of toxic chemotherapy. The panel of drugs will completely obliterate her bone marrow over a nine-day period. By far, this upcoming period will be the most intense (and therefore toxic) chemotherapy Nancy has received since May. And this phase is called “conditioning therapy.” The drugs are meant to totally destroy her existing bone marrow cells, thereby setting the “conditions” for her new bone marrow cells. In theory (and hopefully in practice), this therapy will destroy every cell of her existing and potentially leukemia-harboring bone marrow tissue.
Night Reflections Page 18